Afinitor/Aromasin

@marcials1

thank you for your reply and update, I really need it 🙏🏻🙏🏻

For me, I usually receive the CD of the scan immediately after the PET.

I get the official report and results after 4 business days.

Yes, I did get a mouth rinse, called Magic Mouthwash.

It is a pharmacy-compounded medication with the following ingredients:

• Maalax Plus 25%
• Lidocaine viscous 16.6%
• Nystatin 12.5%
• Chlorpheniramine 45.8%

The instructions were to use 10 ml each time, 2–3 times daily, and it remains effective for two weeks after opening.

I used it as prescribed on the first 3 days, but since I didn’t develop mouth sores and it caused numbness in my tongue and throat, I adjusted the dose to 7.5 ml twice daily, then reduced it to once daily, along with frequent tooth brushing.

Regarding blood work, I haven’t done it yet since it has only been 6 days since starting the medication.

My appointment is next Tuesday for blood tests, including cholesterol and blood sugar.

Tumor markers will be checked after one month (I did a baseline marker test right before starting the new medication so the comparison would make sense; my CA 15-3 was around 300 at that test).

The only thing I’m struggling with right now is significant pain in my lower shoulder that radiates into my chest muscle, right around the mastectomy site.

The pain is present every day, and I feel it strongly whenever I get up from a chair or out of bed.

I plan to tell my doctor about it at my visit next Tuesday.

I’m not sure whether this is related to lymphedema, since my arm and underarm are also painful, or if it’s more of a muscle spasm, as I experienced similar chest muscle pain after my pneumonia episode back in October.

I’m really happy to hear that your PET scan results were encouraging — that’s such a meaningful win, and it truly matters.

I hope the side effects ease with time and that things continue moving in the right direction for you.

I’ll do my best to stay positive as well, one step at a time.

Wishing you calmer days, steady progress, and as much peace and light as possible through the holidays 🤍

This is an update on the side effects after using Afinitor.

After about ten days of using the medication, skin sensitivity began to appear on my face—around the nose, mouth, and on the chin—in the form of redness and peeling, and sometimes it causes itching.

I am using sunscreen with SPF 30 regularly, but so far it has not helped much.

I remember that a similar condition happened at the beginning of my treatment with Kisqali, but it improved after a few days of using sunscreen. At that time, however, I had to use a cortisone cream on other areas of my body.

For now, I prefer to continue with sunscreen before moving on to cortisone cream.

The pain in my left shoulder and the corresponding area of the chest is still present and very severe, to the point that it prevents me from performing many activities. However, it only occurs with movement or when getting up from a sitting or lying position.

I do not know whether this pain has increased because of the new medication, as it was already present before starting it.

As for mouth sores, I have been using the magic mouthwash since day one, so no sores have appeared. However, if I stop using it for one day, I feel a slight stinging sensation in my mouth, which makes me worried and prompts me to start using it again.

I do not like it because it causes numbness in my tongue and mouth, even though it tastes pleasant and resembles strawberry-flavored chewing gum.

I have not had any blood tests or a heart check yet.

I hope that everything will be fine and that my body will be able to tolerate the medication. I will write and update you with the results too.

new update to my condition:

I am still having severe rushes on the right side of my torso, which disturb my sleep.

Moreover, I am experiencing loss of appetite and insomnia.

Hi @norah2024 ~

Sorry for delay getting back to you. You know how life gets. Sort of all over the place lately. Now back to laying low. I’ll take it!

My scans last month were overall very good I am happy to say. Some shrinking in lesions on skull and spine. So while that is good my liver numbers are climbing again and tumor markers are climbing fast as well. My oncologist always says not to focus on the tumor markers so I’m not. For now. I have blood work next week again so will see where I am then. That will be at about the 4 month mark for me on A/A.

About your side effects: I do not have any that you do, but have and had others. Are yours ongoing or have some subsided? Does your oncologist know?

Right now my only side effects are headache and racing heart on occasion. And I’m hungry all the time. I know other side effects will be back or I’ll get new ones. I hope your blood work shows some improvement and hope you get through those current side effects. And I’m with you. I do not want to start another treatment.

Keep me posted and I’ll do the same. Thinking of you and hoping the very best for you.

@marcials1

I went to see the doctor today to discuss my blood test results.

My liver enzymes were also elevated:

AST 115

ALT 203

and

CRP 15.

The doctor told me to continue on the same dose of the medication, but to stop taking the cholesterol medication (rosuvastatin). For the next 2 weeks

He asked me to repeat the tests, including a blood sugar test, after two weeks, since my home glucose reading was high at 133. And he said if it raises beyond that number he can prescribe a medicine for lowering the sugar.

He also told me that there is a new drug from the SERD family that clinical trials have shown to be very effective when combined with Afinitor, but it has not yet been approved.

He said that if it gets approved (expected in August), he will replace my current hormonal therapy with that drug.

That’s all my news for now. I hope we can continue to share updates about our conditions whenever there is anything new.

🧡🧡

@marcials1

Thank you for the update it really helps me,

I am very happy that your test results are reassuring and that your liver enzymes have started to go down.

As for tumor markers, they are a game I still haven’t figured out. The markers kept rising continuously since I started the previous treatment (Kisqali and Faslodex). They went down slightly for only four months, then started rising again until they reached 303 in December. I decided to measure them right before starting Afinitor so I could see whether they would go down after using it and what the value would be.

Ten days after starting the new medication, the markers dropped by 79 points, but the liver enzymes went up, as I mentioned to you before, and that’s what worried me. Therefore, the doctor decided to repeat the liver enzyme tests and blood sugar after two weeks in order to decide whether to continue the treatment at the same dose, reduce it by half, or stop the medication for a while depending on the results.

Regarding blood sugar, I’ve always been borderline, but it never exceeded 112 as the highest value. After Afinitor, however, it now reaches 133, with 126 being the lowest value I’ve had.

Many of the symptoms I experienced at the beginning have now started to settle, except for:

•Elevated blood sugar

•Elevated liver enzymes (AST and ALT only)

•Swelling of the left hand from the forearm to the palm (possible lymphedema)

•Complete loss of appetite and a bitter taste with anything I eat (I’ve lost more than 3 kg so far, which is actually good for me)

I stopped taking the cholesterol medication, and I don’t know what will happen, since high cholesterol doesn’t cause symptoms, and dieting won’t work for me because I only crave certain foods, most of which include meat. I was using a low dose of rosuvastatin 10 mg, and I stopped it about a week ago.

As for the new medication the doctor is suggesting, it’s called Giredestrant. It is a type of SERD and is definitely better than medications that stop estrogen production, because it blocks the hormone receptors in the cancer cell itself working in the same way as Faslodex (fulvestrant).

Even though, as you said, I currently don’t have any problems while using exemestane.

That’s everything I have for now. I hope we stay in touch and keep updating each other on what’s happening. I hope things go as well as possible for both of us. I’ll let you know the results of my blood test next week and the outcome of my doctor’s visit.

Take care, and I’ll update you soon
🧡🧡

Hi @ailurophile
Isn’t the anxiety of new drugs awful?

I was on Everolimus and Exemestane for the last year (Nov 24-Dec 25).

I have to say, I really had no side effects. I have had issues with mouth sores on other drugs, but nothing with this. Maybe a wee bit at the start, but I zapped it with magic mouthwash right away and that was that.

I have a little neuropathy in my feet, I didn’t really see it worsen with these drugs.

Maybe I’m lucky, but also, I didn’t seem to have any energy loss. Or maybe I refused to acknowledge it. 😆

I was really happy with those drugs, but my cancer wasn’t, so I’ve just moved back to IV chemo - which SUCKS! I hate being tied to the hospital.

Hope that helps, and that your body likes and accepts the drugs. Hugs.

hi @ailurophile you have probably read my latest input along with @norah2024 we seem to be the only contributors to this chain right now.
I was very nervous to transition off of Verzenio and Letrozole also. I had lesions on spine, hip bone and skull. In late August I was informed cells were found in soft tissues specifically perateneum which is a layer around abdominal organs due to a mutation in cancer. That is when switched to Affinitir (Everolimus) and Aromasin (exemestsne).
The side effects listed for Everolimus freaked me out. I started 9/27/25. I had numerous side effects mostly through the month of November including the mouth sores and acne. Also some headaches and a little shortness of breath if I walk further than my normal 2 miles. I used the dexsmethssone and one other mouth rinse once after having a bad dose of mouth sores the one time. I used it regularly as a preventative for about a month or more and have not needed it again. If I feel anything close to mouth sores coming I use warm water and salt to rinse. I will use the prescribed rinse again if I feel like they are coming back strong.

I guess overall right now, 4 months in to Everolimus and Exemestane I feel good. Really much better than Verzenio. I did have some liver enzymes increase and tumor marker increase but they are headed down. I currently show no spreading to soft tissue previously seen, and my bone lesions have all shrunk.
Truly I feel better on this new line of meds than Verzenio and Letrozole. I do not know how long that will be the case but I live day to day with the looming next stage always there. But I do not let it rule my life.
One last thing I do get headache spells not sure if related, rapid heart rate I believe from seizure meds I take, and fatigue. Best to you and please let @norah2024 and I know how you are doing or if you have any questions we might be able to help with.

@rstogether @ailurophile @norah2024

I take my Everolimus every morning after light breakfast. Like you said once starting with food you need to continue or vice versa once taking without food stick with it.

I use Tom’s Toothpaste also!

(Sorry I left you out @rstogether you had really good info that helped me a lot)

@ailurophile

I was also very scared when my doctor changed my treatment from Kisqali and Faslodex to Afinitor and Exemestane.

The doctor scared me even more when he explained all the many expected side effects.

He prescribed Magic Mouthwash and advised me to use it immediately after starting the medication, which I did. I did not experience any mouth sores at all; I only had throat pain and dryness, which resolved after a few days.

Because I didn’t develop mouth sores, the doctor stopped the Magic Mouthwash and replaced it with dexamethasone for continuous prevention, which I use once daily.

He also warned me about diarrhea and advised me to use Imodium up to 6 times a day, but I only took one pill at the beginning of using the medication.

What I did experience were some other side effects, such as swelling of my left hand on the side of the surgery, sensitivity in many areas of my body, elevated blood sugar and liver enzymes. I am still monitoring this elevation closely.

As for Faslodex, I had used this injection before and it did not cause any side effects for me, except that it is a painful injection because it is oily, so the injection site remains painful for days afterward. I also feel tired and exhausted after receiving it.

I hope everything goes well for you and that no side effects appear.

Regarding your question about whether the side effects go away with time, the answer is yes, for me. Some resolved after a few days, but the hand swelling is still present to this day, even though it has been a month and a half since I started Afinitor.

hi @norah2024 just getting back to you from your post earlier yesterday. I have never really been able to figure out the tumor markers either. My oncologist told me not to become a tumor marker “junkie”. I compare all the time and she doesn’t put as much into their meaning as I do. Which I find weird.

I forgot I have the gross taste in my mouth too. Not all the time. I crave salty anything and sweets. And yup the processed stuff we need to stay away from.

That new drug giredestrant sounds interesting and promising maybe? Going to ask oncologist about it.

I forgot to ask - you don’t take any supplements or Tylenol do you? I was taking way too much Aceitametaphin for headaches which may have caused my liver issues.

So let us know about your next liver enzymes and blood sugar results. Stay positive!

I find it so odd and extremely annoying that after five years after my mastectomy I had blood work done every 3 months then every six months. Always checking tumor markers. Then Nothing.. I was cut loose. I always suggested they check for tumor markers when I went back to the cancer center due to some kind of symptom I was having. Whether it was back pain, or to check my implants or look into seizures I have, or bone pain. They said no blood work for tumor markers is necessary. And so when it was discovered that the cancer indeed metastasized when I went in for ongoing hip and back pain I asked why wasn’t it ever checked in blood work over the last 6 years to see what my tumor markers might have been. No they chose to do a MRI and a biopsy to make sure it had metastasized. The only thing the doctor said was oh we don’t do it that way. We don’t test blood we do scans. I guess my point is, if they had done bloodwork and checked tumor markers earlier maybe it would’ve been caught sooner.

Good luck with your new med Trodelvy. I am going to research it in case it is my next line of treatment after Everolimus and Exemestane….hope I can just stay where I am for now. Thanks for chiming in! And sorry for for my long rant on tumor markers!

@norah2024

Thank you for the advice—it’s really helpful.
I had my first Faslodex injection this morning, and overall it went fine. Interestingly, I only felt injection pain on the left side for some reason. So far, the main thing bothering me is a strange taste in my mouth. It’s hard to describe, but it feels quite unusual.
Regarding the mouthwash, I’ll definitely follow your recommendation and start it proactively, before any sores appear. I did experience mouth sores with Verzenio about once a month, so I think I may be prone to them.
Thank you again for your guidance.

@marcials1
how are you ding 😊

As for tumor markers, they are considered a sensitive and important indicator for some people, and completely non-sensitive for others, which is why doctors don’t rely on them heavily.

But I’ll be honest with you about what happened to me. When I noticed they had risen to 45 ,for the first time since my diagnosis , I asked my doctor about the reason and shared my concern. He downplayed the issue and said that some labs collaborate with others, which can make results inaccurate. Still, because I insisted, he agreed to repeat the test after two weeks.

The results came back the same.

That’s why I asked him to order a PET scan urgently, which then revealed that the disease had spread to the bones.

I don’t blame the doctor, but this disease is very strange and differs from one person to another.

After starting Kisqali, the tumor markers began to rise significantly for many months without any visible disease progression, which left my doctor very confused.

After the latest PET scan, small areas of bone progression appeared that did not match the large rise in the tumor markers.

To this day, I still don’t fully understand it.

After starting Afinitor, the markers dropped significantly, but I no longer rely on them — they may indicate disease spread at one time and fail another time. I honestly don’t know.

I don’t take any supplements at all.

The only medications I take regularly are a PPI (stomach acid medication) and a cholesterol medication, which my doctor stopped two weeks ago because of elevated liver enzymes.

As for my appetite, I don’t really crave anything at all,even sweets, which I used to love, no longer appeal to me.

Sometimes the only thing I feel like eating is grilled meat.

I truly hope you find healing, and that this new medication continues to work well for you for a very long time. 
🧡🧡🤗

Hi @norah2024, first I am sorry you are having to deal with this additional hassle of trying to find the right dosage on top of everything else! Do you get your Affinitor through your regular pharmacy? Or a specialty pharmacy? I get mine through Lumicera. Does your oncologist call it in for you? Who do they call? What part does your insurance play in this? Mine has to approve the specialty pharmacy. So it is a three way communication and gets confusing sometimes.

Have you let your oncologist know what you are dealing with? If there is no answer from oncologist and/or insurance can you ask your oncologist to reduce to 7.5 until they find 5 mg? Can he/she be more helpful through this process of finding you your medication?

Just to maybe relieve you some, my oncologist said it is not an issue to be off for a few weeks. I will be off for 2 weeks when I have root canal in about 6 weeks. I know her saying that is sort of concerning but I have to trust her while still doing my own research. Keep on them and do not get discouraged. We need to be as positive as possible!

Wish I could be more helpful. Will wait to hear back.

Marcia